Hi,
I am feeling like someone with a dual personality...old brain talks, new brain talks...which forum to post in, etc... but here I am anyway. It is a beautiful Fall day in Minnesota. The sun is shining and the leaves are changing.

Saw the neurologist today and he approved three more months of IVIg every two weeks. I have Myasthenia gravis but he continues to look at other possibilities as I have more and increasing weakness on my left side...so i know that I probably should only post in autoimmune, but since no one is ever there i am interloping here.

I hope everyone has a good week.
Gabe

I have had a "medium" week. Nothing too horrible... and certainly better than being in the hospital yet again the week before last... but just not feeling myself. I have a cold and I think that is setting off a bit of mild metabolic decompensation... I feel weak and am having a lot of muscle pain and dysfunction. My urine dips have been positive for "trace" heme (as a proxy for myoglobin) all week, but haven't gotten more than "trace" so I haven't gone in to get labs checked. My brain feels "foggy" too... I call it "metabolic fog".

So I am just trying to do what I have to do in the moment, from moment to moment, and not dwell on the fact that I am not feeling 100% or ruminate about my body and how much it sucks lately.

I did get a referral to the pain clinic, and finally have an appointment, so I am looking forward to finding better solutions to both my chronic pain and my acute pain that I get with "episodes."

I also heard back from my genetic counselor yesterday that she was able to start the process of getting approval for me to have a fresh muscle biopsy with Dr Shoffner in Atlanta. So hopefully we will find out relatively soon if my insurance company (an HMO) is going to deny me. I really hope not, because both my neuromuscular doc and my metabolic doc said that I really need it.

Also, my PCP and I had the "port" conversation again, and this time he offerred to send me to a surgeon to find out about getting long-term access so I don't need to keep blowing through all of my veins every time I am sick. I kind of chickened out, though, and so for now we are not doing anything about long-term IV access.

Oh, and I finally have my nephrology appointment on Monday (about the metabolic acidosis... proximal renal tubule dysfunction). This is a good thing because I have been waiting to get in there since July, and my bicarb is still low (like 17-18), and metabolic acidosis is one of the few treatable things going on with me right now... except my PCP doesn't feel comfortable managing it himself, and my metabolic/genetics doc doesn't either... nephrology does it all the time, though, so hopefully we will get some headway there... the acidosis and the pain are two things I would really like to have a good plan for by the end of the month.

I've had my MIL staying this week (we get on well ) and popped her back on the bus this morning. Kids are on school hols so lots lined up. Saw Monster House last week - whoa, not reccoed for the littlies!

Doing a dodge with the doctor; got my U/S results which basically said female bits fine, kidney bits fine, only oddities are elongated kidneys but within normal parameters and enlarged adnexal vessels on the right side. So no expanation for my abdominal pain there. It was bad last Sunday, enough for me to think one more hour and I'm going to have to go to the hospital, then it stopped. It is weird-strange-odd. That's me through and through, never straight forward *sigh*. Other things happening with it too, so trying to muster up the gettum to go back and say "what next", but life is busy in the hols.

Planted some more herbs, my kangaroo paws are still alive - I'll try and post a photo for you Mama! and the dog has managed to drag something disgustingly dead, awful and smelly back home...again.

K

Lex,
The dog is just bringing you fertilizer for your garden LOL!

Lex, why do we always have similar sx? It's kind of wierd. I hope that yours resolves its self.

mama